Tiny, it is interesting that your mom -- and so many other LOs in the responses -- doesn't want to know more about her disease. My mother is Cleopatra (queen of denial) and has used her crown as a coping device all her life. I'm sure if she had dementia (we suspect MCI) she would not want to know all the details.

My husband (who has LBD) accepts that he has a particular kind of dementia and in a way I think he finds it a relief to know there is a reason behind some of the odd things in his life. He does not hesitate to tell people he has LBD. We often joke about it. One of his jobs is folding towels. If the afternoon goes by and he hasn't done it I ask if he and Lewy are trying to get out of their chores by forgetting. When I forget something and he remembers it, I look at him and say, "Tell me again which one of us has dementia?!" When he insists he can do something I say, "yes, you are very good at that, but I think right now Lewy isn't going to cooperate, so how about if I do it this time?" We can both blame Lewy for the bad times.

Coy is not particularly interested in reading about the diseaase or learning more details, but it has helped me a lot that he understands that he has it and we don't have to tip toe around the topic.

Tiny, I am sure you will develop very effective ways to interact with your mother. It sounds like you've come a long way in a very short time. Hang in there!

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Fri Dec 31, 2010 9:26 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Denial or Dementia?

Love that communication style, Jeanne, that you both point to Lewy as the reason he is unable to do something. It makes him feel more important and validated I imagine. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Fri Dec 31, 2010 9:31 pm

tiny

Joined: Mon Dec 27, 2010 11:34 amPosts: 67Location: North Carolina

Re: Denial or Dementia?

Kudos as well Jeanne and I have to say I'm getting better each day because of what I read here. I am so going to try your line "Which one of us has dementia?" Mom will lovw that and perhaps that line may open up some dialogue.

_________________Katie (36) daughter of Marcia (70)

Fri Dec 31, 2010 11:00 pm

debkhs

Joined: Tue Nov 23, 2010 12:20 amPosts: 31Location: Outer Banks, NC

Re: Denial or Dementia?

I have wondered if I could explain anything about this disease to my mom when she is in a rare lucid moment. After our first neuro appt 2 years ago, she never once asks ?'s later even though I know she heard AD and PD in the discussion. Once on the phone I heard her tell a friend, well I don't think I have AD, but that was it. Now she has progressed so far that I'm afraid she would take any information she might get and become agitated in her denial (she says right now that we act like she is crazy and we are the ones who are confused) or that she might become more depressed. I don't know what to do, but I do wish that she could have some understanding so that I could say the great line I read of a cg here, "That's not my world mom, that's yours!" or that's your Lewy talking. Any suggestions?Debbie

_________________Debbie 57 daughter of Evelyn 82When you get to the end of the rope, tie a knot in it and hang on!

Sat Jan 01, 2011 2:01 pm

Julianne

Joined: Sun Aug 29, 2010 5:46 pmPosts: 610

Re: Denial or Dementia?

Katie,

As far as the powers of attorney, I am not quite sure from what you say if your mother has them or not, but even though it's hard, I urge you to pursue it if she does not.

If she is having control issues, one way to approach it is to tell her that THIS IS THE WAY TO DICTATE what will happen if/when you are no longer able to do so yourself. In other words, by dictating the terms of POAs now, she can be assured that what happens later is what she wants. It is important that she not view the POAs as just relinquishing control to the agents to do whatever they want with her and her property.

In my law practice, I urge every client who comes in for a will to do POAs also, and if they are reluctant (usually those who have control issues about themselves or their property during life), this is one way I get the value of the POAs across to them. Once they understand that the POAs are a way for them to exert, not lose, control, they are usually all for it.

Hope this helps,

Julianne

p.s. On the driving issue, when my mother got to the point of being dangerous behind the wheel, I spoke to her doctor before Mother's next appointment and asked her to say something if she felt Mother should stop driving. She did, and she handled it beautifully. Mother agreed not to drive anymore, even though it was very irksome to her. Lots of elderly folks look at doctors as real authority figures, and they take things coming from the doctor that they would never listen to their kids saying! So let the doctors help if they can and will. Especially with a dangerous matter like an incompetent driver, it is so important.

Sat Jan 01, 2011 2:34 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Denial or Dementia?

I think this can vary from state to state, but in MD you can report a person you think is not competent to the local sheriff, who can require a driving test of the person. My dad's dr. did NOT want to get involved, although he did suggest to my dad that he not drive anymore. We asked my dad to take a driving test, and all they did was administer the written and eye tests! They never made an 88 year old take the driving portion and cleared him to drive for something like 10 years!!! That's when I had to intervene and take the keys away. I just couldn't bear the thought of my dad hurting or killing someone because he really wasn't competent to drive. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Jan 01, 2011 3:10 pm

tiny

Joined: Mon Dec 27, 2010 11:34 amPosts: 67Location: North Carolina

Re: Denial or Dementia?

Julianne,Mom does have the POAs lined up. A therapist friend suggested researching mental incompetancy for the future though because things are coming to the proverbial head here. I think I need to get lost for awhile. This week has been great! She's doing well heating things up, doing laundry, cleaning etc and now she wants to drive. She doesn't think she'll have hallucinations again, "It was the Soma." I'm thinking of course it was mom- those drugs increase your dimentia related symptoms. But, I'm proud of her progress. However, after dropping the "I'd like to try and drive Monday" bomb, I tried asking a few questions about how she felt etc and her response was that I have to wait 24 hours to have a conversation. According to mom, when she brings something up, I am supposed to respond with "That's a good idea," and then wait until she brings it up the next day to ask her her questions or tell her what I think. "What????" Yes, she said that is how things are supposed to go. So, although she seems very lucid and adept, I'm thinking she needs all of this time to process, write out her script, and I have to step up. I must get beyond the traditional roles, manipulation and being ruled by guilt. Don't we have to compromise? I cannot neglect all of my needs and wants.

_________________Katie (36) daughter of Marcia (70)

Sat Jan 01, 2011 6:25 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Denial or Dementia?

Katie, in the eight years of Lewy I am still often caught in that 'traditional role' quandary. My husband has always been right--in his eyes, anyway, and usually in mine, as well. Even in subjects about which I held much greater knowledge he would have the last word. And he often sounds--even now, occasionally--so authoritative it's hard to deny him. For the most part I've learned to play along with the folly and cater to his irrationality except where safety issues are concerned. As they say, it's a tough job but somebody's got to do it.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sat Jan 01, 2011 7:06 pm

tiny

Joined: Mon Dec 27, 2010 11:34 amPosts: 67Location: North Carolina

Re: Denial or Dementia?

Tough; yes! Finally, after an hour phone call with my sister, she says she's coming to have the "come to Jesus" talk with mom. I told her one of us would have to do it because mom and Lewy were sure trying to work me over. If I'm going to be the kid, I want an allowance, ice cream and new school clothes .

_________________Katie (36) daughter of Marcia (70)

Sat Jan 01, 2011 7:58 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Denial or Dementia?

Quote:

If I'm going to be the kid, I want an allowance, ice cream and new school clothes .

That's right--and you want her to tuck YOU into bed!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sat Jan 01, 2011 9:41 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Denial or Dementia?

And 2 recesses a day so you can go out on the playground!Seriously, it isn't fair for you to give up your whole life. Yes, take good care of your mom but take good care of you too. Your mom's had her whole life to live and you presumably have many years left ahead of you. I'm sure you don't want to start suffering from stress-related diseases and be debilitated the rest of your life either. You have a right and obligation to yourself to take care of you. Been there. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sun Jan 02, 2011 10:02 am

tiny

Joined: Mon Dec 27, 2010 11:34 amPosts: 67Location: North Carolina

Re: Denial or Dementia?

I know, I'm getting there. This last week has revealed a great deal about both of us. Although I didn't have much of a life before, I still had one. I keep the documentary "Grey Gardens" in my head so I don't end up like the daughter. Yesterday I had a revolt of the mind and I'm forcing the heart to follow. One again, thank you all. Don't forget your recess!

_________________Katie (36) daughter of Marcia (70)

Sun Jan 02, 2011 1:58 pm

mistyeye

Joined: Mon Jun 21, 2010 2:24 pmPosts: 32

Re: Denial or Dementia?

My husband was in a dementia facility for 30 days from mid Aug to mid Sept 2010. WHile there they tried to tell him about the dementia. He has been and still is in full blown denial. He also thinks they gave him some medication that caused all of this. He doesnt remember that he 'ran away' from home twice before the stay at Sr. Care. He has always owned his own businesses and been his own man, until now. I think letting go is especially hard for a man or anyone who has had a great degree of responsibility in the past. He occasionally asks what is wrong with him and why cant he get better? Since he cant handle the truth, I just say that something happened in his brain, and they are trying to figure out what it is. Since he sleeps 16+ hours a day, it doesnt come up too often. But I have to remember to be the one to change with the conditions and go with the flow. He is only 68 and I am 56, been married 25 years, and sometimes he thinks I am the ex wife, etc. It is very hard, as you have read from other people. I just lean on my Faith , my trust in the Lord, that everything will work out for our good. Even though most days, it is hard to find any good in this horrible disease...

Sat Jan 15, 2011 12:32 pm

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: Denial or Dementia?

misty...i understand the denial.. its tough.. my hubby is 65 and this has been going on in some fashion for the last 10 years.. originally i heard not to tell them.. so i didnt. even tho it was discussed quite a bit with docs, in front of him.. but yesterday with the new doc.. we talked a lot and for the first time, i think he may have understood and broke down in tears..... since he has ptsd, he has always been emotionally shut down, so not sure if its been denial or that.. or how long this new awareness will last.. if knowing is scary, which im sure it must be.. thinking now its ok not to discuss, unless he wants to or if very necessary, when making a decision or need to convince him we need to go to the doc's AGAIN!!

I've given up discussing most anything related to Lewy. Today is one of those days I would like to take a baseball bat and destroy a room. Maybe sayiing a prayer is a better option. Actually, I'd prefer both. Thanks for the insights.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum